This is one of the hardest aspects of having an illness that royally fucks up your life. You don’t feel like YOU anymore. You don’t really know who you feel like, but you no longer recognise the person that stares back at you in the mirror. Maybe you don’t look like the you of healthy times past. Or maybe you can no longer do the things that once defined you in a healthier era. Whatever the reason, your reflection and sense of self suddenly pack up and go on an all-expenses paid cruise leaving you to house-sit in the shell of a body you no longer know. I don’t remember ever valuing my health; it was something that I just took for granted, like an old rug that is no longer noticed. But once it was stripped away the wave of grief that rolled over me was almost too much to bear. It’s like being forced to remember all the things you USED to do, the abilities you USED to have and the opportunities you USED to grab before chronic illness took hold of you and wouldn’t let go. You’re left with a void that you don’t know how to fill, and it is one of the loneliest and scariest holes that you’ll ever go down. I remember thinking ‘Who am I?’ ‘Apart from my illness, what defines me now?’
There’s no advice on grieving for the person you used to be. When I was first diagnosed, I spent the first year desperately trying to get back to ‘pre-illness me’. But the more I tried, the further away this reality became. It was like I had ended a relationship with myself, and thus this problem is what I began to think of as the ‘break-up dilemma’. Cast yourself back to a time when you ended a relationship with someone. Maybe it was because their ‘get up and go’ got up and left. Or perhaps their breath was enough to level a small village, or they had a better relationship with your Visa card than they did with you. At the time, you know the break up was the right thing to do. However, after a long hard day at work in a moment of weakness or a particularly heavy dalliance with alcohol you look back and remember him or her with a shimmery rose-coloured glow around them. You remember them looking like Brad Pitt and smelling like a Hugo Boss advert. You have an IDEALISED version of them, and you miss them like chocolate cake on the first day of a diet. Well, that’s what your brain does with your pre-illness self. You convince yourself that you used to be some kind of spanxless superhero, capable of doing and being anything. You remember yourself being fitter, more capable, more sociable and just generally all around drop dead gorgeous.
And the reason you remember yourself like this? Because all you can see is what you can’t do now. So your not-so-helpful brain twists your old you into the opposite of everything you are now. According to my brain at that time, my pre-illness self was:
- Size 6
- Impossible high heels, pencil skirt and power shirt
- Mocha Frappuchino grabbed on the run between work and gym sessions
- Cordon Bleu chef whilst doing the ironing and answering emails on a swanky new blackberry.
- Nipping home to change into some skinny jeans before going out to a fabulous new bar surrounded by all of my friends.
Amazing eh? Wouldn’t you want to know this stupendous superhero that lit up a room whenever she ran into it? (For some reason, my brain always pictures pre-illness me running everywhere). Now I’ve never worn skinny jeans in my life. I’ve never liked going to the gym and I’m not sure that I even know any fabulous bars let alone frequent them. Nevertheless, this was the person I remembered, grieved and mourned for. She had all of the abilities that I felt that I’d lost, and it left me looking in the mirror seeing this person:
- Size 114
- Stick/mobility scooter
- Bottle of pills and prescription
- Dowdy, holey clothes
- Alone, miserable and invisible.
See the problem? Now obviously I’m exaggerating slightly (I’m prone to do this) but I hope the general point is there. Chronic illness can make you feel like your identity is stripped away from you and that your qualities and personality are somehow intertwined with your ABILITIES. But they’re not. Just because you are no longer able to abseil down a building, it doesn’t mean that you’re not you: the characteristics that enabled you to face death-defying heights are still in place. If you were a social butterfly pre-diagnosis, chances are you’re funny, bubbly, caring and interesting and those qualities haven’t disappeared with the onset of illness.
Strangely, when I asked my friends how they remembered me in healthier times they didn’t mention this skinny-jeans-wearing- coffee-drinking gym-goer. The activities that they associated me with were much more mundane, and, to my surprise, much more sedentary. It turns out that I didn’t run everywhere and that I used to love curling up with a good book as much as I do now. Don’t get me wrong, there were some activities that I used to do before that I am unable to do now. My career in teaching, for example, ended abruptly with the onset of my illness. As much as this was a cause of grief initially (and still is on days when I’m feeling particularly poorly) I was reminded by someone very dear to me that the qualities that enabled me to teach in the first place—communication, passion and an occasional attempt at humour—were still lurking underneath diagnoses, labels and pills. Your wonderful qualities may need to be used in a slightly different way, but the point remains that you, my dear reader, are still YOU. You don’t need to ‘find yourself’. You’re not a purse that is mislaid and can only be found again by rummaging frantically in a messy bag. You’re not lost, you’re just buried under low self-esteem, cultural stereotypes and inaccurate conclusions that you’ve drawn about yourself and your new ‘ill’ persona. When people say you need to ‘find yourself’ I choose to believe that you need to rediscover your true self, the values and opinions that you hold dear that existed before you started this battle with chronic illness and would exist even if a miraculous cure was found tomorrow. The jigsaw pieces that form to make up your wonderfully unique personality, the qualities that would make someone else say ‘Oh that’s so you!’ You’re still there, you’re still you, and you’re so worth it.